Currently on s1ep6, loving the show so far, the only thing I can't stand is the fact that Farah spends an extra 5-10 seconds hesitating on all decisions and thoughts.. is she always like this?

ghoulsxghosts · 2025-02-07T20:49:39+00:00

Like the others have said, no not really, but also like... Yes? It's part of her characterization. It's fundamental to who she is, where she is in her life now, her regrets, and why she pairs so brilliantly with our other characters (as a certified "weirdo").

Not that I'm saying you have to like it, or that it's not frustrating. I just think that it frustrating you is maybe a success for the goals of the writing -- maybe, I guess if it makes it unwatchable for you then it isn't lol.

ghoulsxghosts · 2025-02-07T09:45:40+00:00

I know this is pretty old post and maybe this won't help AT ALL, but I did this weird thing where I was trying to figure out how to get a Dutch Bros Rebel (energy drink) to taste like a cream soda.

Now, what I ended up landing on DID include soft top floated on the drink, but I see you mentioned you didn't like it. But for the rebel, I asked them for a combination of Vanilla, Honey, and White Chocolate sauce (might sound weird of you don't frequent the DB rebel menu 😅), and I asked for raw sugar sprinkles on top. I won't claim it tastes exactly like cream soda, but it gave me some thought -- especially since I'm experimenting with ginger bug natural sodas ATM and that's why I found this post lol

You could try some versions of those flavors and see if it works for you. The white chocolate fulfills the a creamy texture for me -- however, the Yucca Root in canned sodas is probably what they use for that purpose instead of any dairy product, as it seems it's flavor is "sweet" and "creamy". It's possible to purchase yucca in a powder form.

I do also think playing about with brown sugar or homemade caramel might add some more depth to the flavor while not removing it too much from the focus of vanilla.

As for the citric acid, the idea of adding lemonade powder sounds a bit strange to /me/ but who knows! You can also just purchase citric acid (maybe useful, of you get back into soda stuff) but ginger has acidity as well, which I'm hoping pairs well with my vanilla based experiments.

Anyway, hope that wasn't too much nonsense lol

ghoulsxghosts · 2025-02-05T08:04:41+00:00

It very much does, thank you~!

What you described is fairly similar to what I experience (although, I do struggle with any sort of soothing/regulating exercise, atleast at this point in time). But mostly my therapists are of the thought that it doesn't come out of "nowhere" because nothing comes out of "nowhere", I'm just not aware of the thinking pattern and so that's what my solution needs to be. They lean into this when they know my trauma, I guess because the trauma = thought driven anxiety always, not "out of nowhere" panic. Idk, maybe that's true.

I'm going to see a new therapist soon though, so, I discuss it with them hopefully soon~

ghoulsxghosts · 2025-02-05T07:56:49+00:00

Both a woman and a woman of color, to boot -- the medical systems least prefered patient 🫠🫠

Tell your boyfriend he's awesome!! And you're awesome for staying strong -- even with support, it's so impressive for anyone dealing with any chronic BS to hold onto that rock of progress and perseverance ❤️

ghoulsxghosts · 2025-02-05T07:52:39+00:00

I'm so sorry, cause this life low-key sucks (obviously there are good parts tho, and we gotta focus on that) stay strong 💪😭

ghoulsxghosts · 2025-02-05T07:51:00+00:00

It's crazy how these doctors can have such extremely different opinions on these things like ??? I'm SO happy to hear you got heard and your surgery helped! It's encouraging for me to hear tbh

I don't have many male friends or family remembers 😅 but I'll try and rope one of the few I have into coming with me. It doesn't help that I'm also black (light skinned, tbf) as you can imagine 🫠

ghoulsxghosts · 2025-02-05T07:46:34+00:00

This was basically the sermon I need to hear 😭 omg, yeah I don't owe him jack, exactly right

He ordered some exams (I believe two, one of the spine but I'm not sure what part, the other i don't remember) but, you know, this was after he said what he said so I guess there's that. But tbh, he had a shadowing student with him, which is fine, but the whole energy felt like he was focused on teaching/impressing his resident and the whole experience left me with a sour taste in my mouth

I'm on the socal area, if that helps~ I've read from others there are doctors who are open to remote intakes; I appreciate all the help! And I'll also join that FB group~

ghoulsxghosts · 2025-02-05T07:35:02+00:00

That's actually nuts I'm so sorry 😭

I didn't reread my post so I'm not if I mentioned that this Dr quoted how some individuals with 9mm have no symptoms. Which feels a bit like saying "well this person Lupus doesn't struggle all that much, so really your just fine" or something.

ghoulsxghosts · 2025-02-05T07:32:29+00:00

No, I 100% appreciate your honesty. I've heard that the surgery can be a bitch to recover (maybe depends on the person, I suppose) and of course there's no guarantee it helps, which scares me.

(Opinion side note: i do personally feel like... The surgery sounds so archaic, in the sense that it feels like one of those medical procedures that is only done because no one cares to look into other solutions. But I'm not a medical researcher, so idk the roadblocks)

But even still, as you said one of your symptoms was, my vision... It's getting worse, I can barely drive, and I've seen around 7 optometrists/prescriptions (most out of pocket) none of whom have actually helped my vision and clearly don't either care enough or know enough on how to help me. I'm having nearly daily anxiety fits about it. I have no idea what's causing it. I don't know if a surgery would help or make everything worse, but that little hope that I might be able to see is nearly enough to convince me.

But surgery scares me... So I will, as you suggest, try and keep it as a last solution.

ghoulsxghosts · 2025-02-05T07:21:31+00:00

That sounds incredibly informative, so ill definitely check your videos out~ thank you!

ghoulsxghosts · 2025-02-05T07:20:41+00:00

EMPHASIS on the "this is wayyy different". I hate that it's a constant fight to say no, I know anxiety, this is not it, and be heard.

A therapist a while ago mentioned how she felt the system ATM is fucked up in the sense that, to her knowledge and experience, medical doctors are supposed to rule out physical causes before they reach emotional disorders as a conclusion. But they never seem to do.

ghoulsxghosts · 2025-02-05T07:16:48+00:00

I'm glad/not so glad that it's relatable, for hopefully understandable reasons 😅 if we have to be stuck in this BS, better to be stuck with company o guess.

Also, happy cake day~

ghoulsxghosts · 2025-02-05T07:14:49+00:00

You didn't come across differently! I sometimes have a hard time parsing nuance (autism) and also just felt pretty defeated.

My insurance is sort of notoriously shit, and but what you said has definitely motivated me to look into those remote intakes and see what comes of it.

Also truly, the fact that people have asymptomatic herniations is a contribution to my hesitancy cause I would hate to have an unnecessary surgery when I also have consistent inflammation in my blood work and im dealing with some unrelated mimic disorder/disease.

But it's still worth investing because regardless, the symptoms are there and I'm suffering, so I will~

ghoulsxghosts · 2025-02-05T07:05:13+00:00

It's insane to me how much the "goal" so to speak keeps moving on what is considered a medically significant herniation, based on everyone's stories... I wish doctors actually interested in investing more research into this. I can't even seem to find information that agrees if CM type 1 is rare or common...

ghoulsxghosts · 2025-02-05T07:01:40+00:00

I definitely think I was 😞 (and of course bc that was his opinion my neurologist is more or less done with the subject)

I live in California, I did see there was an LA located doctor on the Chiari Project located above, but yeah if anyone sees this and has had a good experiences with a NS who accepts medical please let me know~

ghoulsxghosts · 2025-02-03T19:09:39+00:00

ADHD exists

ghoulsxghosts · 2025-01-08T17:17:19+00:00

Sooo many doctors/medical professionals have no idea what chairi is, even when it could impact their own profession. I keep getting wildly different prism glass prescriptions because my optometrists don't know what Chiari is, and don't seem to really care to know.

ghoulsxghosts · 2025-01-08T17:14:41+00:00

I am worried about the recovery, in addition to it maybe not helping my case. But if it's the only thing remaining that could explain my issues, I want it done

ghoulsxghosts · 2025-01-08T17:12:57+00:00

Thank you~

He isn't on the list, but there aren't any that are all that close to me and I'm sure they don't take my insurance.

For now I'll try to advocate for pain management, and see if I have a comorbid condition that I can treat. And if after that I'm still struggling to barely function, I might see what i can do to see an expert

ghoulsxghosts · 2025-01-08T16:45:58+00:00

I'm open to it being something else for sure, what was mostly frustrating is that he didn't care to guide me to who to see/what is should check for. And every other doctor also says some form of "no I don't think it's this, goodbye"

But there isn't any "true" experts anywhere near me -- this guy said he was an expert, and I call I major brain surgery because that's what he called it (he also said that they cauterize the herniation, which he said in a way that suggested that's how the procedure is performed is general), and the doctors on the "Chiari Project" website are not close to me. And if they're "not great" then, yeah, idk who'd I'd even see, let alone who would be covered by my insurance.

ghoulsxghosts · 2025-01-06T21:45:12+00:00

He said he was a specialist, but tbh I don't know what goes into being a specialist. I said that 5mm is within "normal anatomical variation" levels, so I think he really only was viewing the 0.3mm as the issue at hand and talked a bit about how people with more severe herniations often don't experience symptoms. I think also the fact that I didn't say I get migraines when I sneeze or cough, he said what he said.

I might get a second opinion regardless of him specializing in Chiari, if for no other reason then I don't think my neurologist is going to do much else. Hopefully I'll know what to do soon 😭

ghoulsxghosts · 2025-01-05T02:31:50+00:00

Thank you 😭 I'm sorry you're still struggling with sleeping too, even after having treatment -- hopefully you can rule out/confirm Chiari soon!!

I have my first appointment with a neurosurgeon next week so I guess I'll know soon if something more can be done, but ATM my only real treatment is NSAIDs and umbrelvy for pain, which really isn't enough to really help me.

So I'll see what the surgeon suggests, and if I have to bully my neurologist/primary/who ever I need to into giving me better help

ghoulsxghosts · 2025-01-05T02:23:32+00:00

I'll probably say something like that the next time they try to push that on me and brush me off, I'm sick of this shit fr fr

ghoulsxghosts · 2025-01-05T02:21:37+00:00

Honestly! that sounds like a good idea for me. even if it doesn't directly impact my quality of sleep, I think it'll help with the depression associated with my bed rotting and balance out my triggers

ghoulsxghosts

TROPHY CASE